Altruistic donors boost hopes for those waiting for kidney transplant
Their stories amaze.
Brenda Bogue, a 44-year-old physical therapist and marathon runner who lives in Schaumburg, was inspired to donate one of her kidneys by a story she read last summer in the Daily Herald.
It was about a man in St. Charles who donated a kidney, inspired by the example of his daughter, who had signed up as an organ donor before she died at age 17 in a car accident.
Before reading the story, Bogue hadn’t realized being a living donor was an option.
“To me, it was kind of like, why wouldn’t I?” Bogue said as she was preparing to return to work a week after the laparoscopic surgery Dec. 30. She’s also signed up to run another marathon in September.
While the decision to give up a kidney might seem overwhelming, people who have done it say it really isn’t that hard and it’s incredibly rewarding.
Bogue’s donation completed the missing link in a set of matched pairs that allowed three people, including Donald Fradkin, 76, of Deerfield, and Adriane Price, 43, of Wadsworth, to get new kidneys.
For donor Scott Kalkis, 28, a casual conversation at a company Christmas party led to a donation.
Kalkis, who manages the Firestone Complete Auto Care at the Fox Valley Shopping Center in Aurora, ran into the manager of another Firestone store at the party in 2009 and thought he looked unwell.
“I didn’t know how sick he was, but you could tell he wasn’t right.”
Carlos Cerda, 57, who now manages the Batavia store, told Kalkis he needed a kidney transplant, but he thought one of his two daughters would be able to supply it.
Kalkis volunteered to step in if needed. “It was actually real easy,” he said of making his promise.
Months later, with minor health issues making his daughters ineligible as donors, Cerda recalled Kalkis’ comment and, with trepidation, asked if he was serious.
Kalkis, of Plainfield, said he was. It wasn’t until Cerda, of Lockport, brought over a stack of paperwork, though, that he realized the enormity of his promise. He didn’t waiver.
Huge need
With almost 90,000 people waiting for transplants and only 13,000 done a year, there’s clearly a need for more donors, said Dr. Joseph Leventhal, director of the living donor kidney transplant program at Northwestern Memorial Hospital, where these transplants were done.
While the bulk of transplanted kidneys come from people who have died, or from relatives or close friends who have a strong emotional tie, there also is a growing number of “good Samaritans” who donate to people they know barely or not at all.
“We do find when people hear about someone they know, even remotely, ‘good Samaritans’ step forward,” Leventhal said.
It is those kinds of donations that offer the best opportunity for cutting into the backlog, along with new programs that create donor chains that make it easier to match available kidneys with needy patients.
And with laparoscopic surgery, the recovery time is much less than in the past, making donating easier. Bogue, for example, spent one night at the hospital. “The pain was always manageable,” she said, citing fatigue as the biggest factor.
Kalkis has found the recovery more difficult. As someone who can’t stand to sit around, he quickly returned to long work weeks. “I probably pushed myself way too hard,” he said. Still, he doesn’t regret his decision. “If I could do it again, I would in a heartbeat.”
And publicity about donors’ stories helps.
Bogue, who was unaware she could donate a kidney while still alive until she read the Daily Herald story, has written up her story for an Internet blog to help spread the word.
At Northwestern Memorial, where 167 living donor transplants were done last year, about one-third involved a party unrelated to the recipient, Leventhal said. Potential donors are screened for emotional as well as physical health, to make sure that they are properly motivated.
Expanding the pool
“I was so sick,” said Sybil Bryant, 42, of Schaumburg, who had been going to dialysis three times a week for almost four years, and found it hard to hold even a part-time job, given her treatment schedule. Her brother, Alex Lucas, 40, of Sauk Village, was willing to donate a kidney.
“Whatever it takes to save my sister,” he said.
Physicians told him he didn’t meet the medical criteria, citing his weight. Determined to help his sister, Lucas dedicated himself to a healthier lifestyle and lost 40 pounds.
That made him medically eligible but he and Bryant found they were not compatible blood types. Bryant’s disease was now advanced and if she couldn’t find a donor, her prospects weren’t good.
Clinicians asked Kalkis and Cerda, who were a match, if they could instead pair up with other people so that Kalkis’s gift would make two matches possible.
At first, Cerda resisted. But after considering all the testing that is done, he decided the doctors wouldn’t give him a bad kidney.
“If I can help someone else like I am being helped, why not?” he reasoned. “Now, I feel good about it.”
Bryant said her new kidney is doing “wonderful.”
“Instead of saving one life, they actually saved two,” she said.
“Even though my kidney didn’t go to my sister, it helped someone else,” Lucas said. The four met for the first time following their Nov. 19 surgeries the day before Thanksgiving.
“It transformed everything for me,” said Cerda. “I was tired all the time from dialysis. I didn’t know how long I’d be able to work. I felt 100 percent better after surgery.”
Completing the circle
Paired exchange is a relatively new concept in the United States, but is becoming more common. The transplant team at Northwestern has performed more than 40 paired exchanges, with more than 30 occurring in 2010.
“By entering willing compatible matches into our database, we are able to find more matches and expand the number of transplants,” said Dr. John Friedewald at Northwestern. “Paired exchanges provide greater access to organs to more patients, faster. A living donor kidney tends to work sooner and lasts longer than a deceased organ and the wait time is much shorter for the recipient.”
While most donor pools are local and tied to one hospital’s transplant program, there is a move toward a national exchange to further expand the number of potential matches. Loyola University Medical Center in Maywood was the first Midwest partner in that effort through the National Kidney Registry.
It was the story in the Daily Herald of how Tim Joos of St. Charles donated a kidney through that program that first caught Brenda Bogue’s eye.
Joos began advocating for organ donation after seeing how his daughter Samantha, killed in a 2003 car accident at 17, had saved someone’s life with her heart valves. Eventually, he said, he realized he could practice what he preached by becoming a living donor himself.
A physical therapist, Bogue has treated people on dialysis.
“I’ve seen first hand what a rough life that is,” she said. “I just imagined if that was my father or my sister that needed a kidney, and I wasn’t a match, and when I did that, gosh, I would just hope that someone else, if that was my family, would do the same for me.
“So many people have done so many wonderful things for me and my family that just naturally as a human being it makes you want to turn around and do something kind for somebody else.”
Her religious faith made the decision easier, she said. “God has given me the gift of empathy. He expects me to use it … I have a tremendous peace about the whole thing.”
Ÿ Megan McCann at Northwestern Memorial Hospital contributed to this report. Brenda Bogue’s account of how she came to donate is at dailyherald.com and at simplycara.blogspot.com.
Becoming a kidney donor
More than 85,000 people nationwide are on a waiting list for kidney transplants. Learn more about becoming a donor: Ÿ Northwestern Memorial Hospital living donor kidney transplant program, (312) 695-0828. Ÿ Loyola University Medical Center Pay-it-Forward Kidney Donation Program; (708) 216-3454 weekdays. Ÿ The National Kidney Foundation of Illinois, (312) 321-1500, nkfi.org. Ÿ MatchingDonors.com, (781) 821-2204. Ÿ Living Kidney Donor Network, (312) 473-3772 or lkdn.org. Ÿ Cara Yesawichs blog: simplycara.blogspot.com. Ÿ National Kidney Registry, kidneyregistry.org.